Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Saturday, May 26, 2012

Case puts the ABLE in disabled.

After the birth of sweet Case a lady from our insurance company called and told me "Because of all your baby's problems he is probably considered disabled." She was right. According to the state Case is indeed disabled. I remember the first time she told me that. I was standing outside of the NICU wondering why I was wasting my precious cell phone minutes talking to this lady. Disabled? Really? How can a baby even BE disabled. A war veteran or a woman who lost her leg in a biking accident yeah, it makes sense that those people are considered  disabled but my sweet, new, precious baby did not seem disabled to me. Once I got over the fear and faced the reality of raising a "disabled" child I realized what a blessing it is to be his mom. He may be disabled but he had never let that define him. His ABILITIES out weigh his DISABILITIES. He is able. He is able to have peace in the midst of chaos. He is able to overcome obstacles. He is able to love when most would hate. He is able be be different and not ashamed. He is able to be strong while others would be weak. He is able to endure pain and be pleasant. He is able to rise above the sentence of a disability and embrace life. He put the ABLE is disabled and amazes us all. 



Tuesday, May 22, 2012

"You are stronger Than any terrible possible scenario today"


Yesterday was Case's Nephrology appointment in the Children's Care Clinic. We met a new Dr. He was great, thorough and gentle. He had a genuine concern for Case and took lots of time talking with us. Case's good kidney looks good (there are small pockets of fluid but this is fine for now). His bad kidney is very clearly not functioning and very slowly shrinking. The Dr. asked if he has dwarfism. If I had a dollar for every time I got asked that question, I'd be going to Disney Wold. Case does not have dwarfism. He had a skeletal ex-ray while in the NICU. It came back normal. The dr. was concerned with his Sacral Dimple. He thinks he has a tethered cord and Spina Bifida Occulta. This is not the first time these conditions have been mentioned. He wants an MRI in the future. Because Case is so young, he will have to be knocked out for the MRI. I will update you all when a date is made. The doctor was concerned with his size and feeding struggles (as all his doctors are). He would like another Upper GI. This time he wants it followed into his bowel. He thinks there may be a malrotation. A Malrotation is "twisting of the intestines (or bowel) caused by abnormal development while a fetus is in utero, and can cause obstruction. Malrotation occurs in 1 out of every 500 births in the United States". I will be speaking with his GI doctor in June about this. He also ordered blood work and a renal sonogram in the near future. 

Whew, That was a busy appointment! Sometimes when Dan and I leave appointments like this we feel a little overwhelmed. Since before Case's birth we've spent appointment after appointment being bogged down with all the "worst possible scenarios" that there could be. Sometimes it feels like a lot. It is then that I look to God and tell Him I trust Him. I trust Him with Case's sweet life. We've been through hell and back with scenarios and I am done letting them get the best of me. 

"Remember that I am sovereign over your circumstances, and humble yourself under My mighty hand. Rejoice in what I am doing in your life, even though it is beyond your understanding."

"You are stronger
Than any terrible possible scenario today
Come and save me
You're the only source of all the peace I need"

Thank you God for being stronger. You are all the strength I need.


Monday, May 21, 2012

I have a confession.


I have a confession. I'm tired of fighting the food battle. For all of the 17 months Case has been alive, I've been fighting my butt off to get this child to eat right and grow well. The food battle started as soon as Case was born. They whisked him away from me via helicopter (even though we were only minutes away in Magee Women's Hospital) to Pittsburgh Children's Hospital. Once he was gone, the food battle started. I pumped around the clock every three hours to have milk for the time when they allowed me to nourish his tiny body with bottles then with breast. If only it would have been that easy. He was about a week old when they first let him eat, after a day or so they stuck a tube down his nose. Eventually they let me try to nurse. He was too weak. Once he was sent home, they took the tube out of his nose and I was feeding him fortified breast milk every 3 hours (around the clock). I was also pumping. This went on until I could no longer keep my milk (around 3 months). He never physically could nurse. He went to Similac Expert Care Neo-Sure. He didn't handle that well, so they switched him again. He's never been a good eater. I begged him to eat. I wiggled him. Walked him. Tapped his bottle. He cried, I cried. I bounced him. supported his chin etc, etc. Once I added solids, I was still begging. Now I held his hands down. Held his mouth open. Got spit on. Vomited on. I cried, he cried etc, etc. Finally when he was 11 months old, they placed a g-tube. He weighed less than ten pounds. I had high hopes for the G-tube and fundo. I thought things would get easier. He would just "eat" and grow. I was wrong. Things didn't get easier, just different. Since then we have switched formulas 4 times. He retched (violent heaves because the Nissen doesn't allow vomiting) so much that he now vomits. He has been constipated; had diarrhea for 4 solid weeks. He is now 14 pounds 6 ounces, 17 months old and once again the doctors are at a loss. This past month his weight went up and down. He isn't gaining right. He is eating next to nothing by mouth and lately gags, chokes and sometimes vomits with most foods (even applesauce). He wants to drink but he chokes, gags and aspirates thin liquids and hates the thickening powder I put in it. I could go on with the "feeding battles" but I'm sure you are already losing interest. :)

Long story short, I'm trying hard not to lose my focus. I've gotten caught up in this never ending (or so it seems) battle. This new formula (he started it Friday) has real foods. We add a powdered calorie and fat booster. I really thought this was it, and I am still holding to the hope that maybe it will take a few more days... We were in public yesterday and he vomited everywhere-the floor, my diaper bag, me. It's not spit up. He doesn't just open his mouth and let it pour out. He retches, sweats and heaves until it comes up. More times than not, something does come up. I was sad, discouraged.

With ALL that being said, I am doing well- just needing to trust in the big plan. To keep on keeping on and count my unending blessings. So, unless you come to my house and find me dead on the floor, I am getting stronger. Ha. Besides, this is what has been chosen for me. I still would not change my special boy, I am just tired of seeing him hurting and sick. I am ready for the feeding battle to end. I'm not in a hurry to get the tube out, just wanting the tube feeding process to go more smoothly.:) After all, what doesn't kill me will only make me stronger.Things could be a lot worse. I still feel blessed.

This is what a nap on a bad day looks like.:)

Friday, May 18, 2012


Happy is as Happy Chooses.


A week or so ago, on our way to the bus stop I was having a discussion with one of my daughters about choices. She was in a grumpy funk and had as I call it "the Eeyore Syndrome.” The Eeyore Syndrome is a made up syndrome that means no matter your surroundings, you are grumpy. "Ho, hum. Nobody cares about me. My life sucks. It's too hot. It's too cold. Nobody loves me…." This particular little girl in our home was just plain grumpy no matter what was going on. She was so grumpy that week that I am pretty sure even if we were in Disney World she would have found something to complain about. As we walked the two block walk to the bus that morning, I told her I could not make everything perfect and neither could she, but what she could do was CHOOSE joy. Regardless of how crappy she felt her life was, she had the power to choose real, true joy. I immediately thought of sweet Case. He is FULL of joy. He is blessed with peace. At his young age he, in his heart, chooses Jesus' joy. He has been pricked, poked, gagged, cut open and IVed. He's spent a collective 45 days in a hospital. Has thrown up every day multiple times a day for months. The list of crappy things he has, does and will endure in his life goes on, but you know what? He is happy. He loves life. If he can choose joy, so can we.:)

I ran across a blog a few days ago that I found to ring true. "15 Powerful Things Happy People Do Differently". I found a lot of great points in this particular post. my favorite point was this:
"2. ACCEPTANCE vs. RESISTANCE.  Happy people understand that you can’t really change a situation by resisting it, but you can definitely change it by accepting that it is there and by understanding that there might be a reason for its existence. When something unpleasant happens to them, they don’t try to fight it, knowing that this will make the situation even worse, but rather, they ask themselves questions like: What can I learn from this? How can I make this better? and they go from there, focusing on the positive rather than on the negative. They always seem to see the glass half full no matter what happens to them."

Throughout our very special journey there have been a lot of "unpleasant things happen to us.” We didn't try to fight these things, instead we have learned from them. THEY HAVE MADE US BETTER. I believe in my heart that God made Case special. I love him just the way he is. I've never tried to fix Case because Case isn't broken, and you know what? I'm pretty sure he feels the same way.:)



Check out the blog post 15 powerful Things Happy People Happy People Do Differently in this blog: purpose fairy. Oh and if you are feeling extra crappy (like I was this morning) you can watch this adorable video. If that doesn't cheer you up, nothing will.:)



A VERY special happy!!



Thursday, May 10, 2012

A very special perspective.

A few days ago I decided to take Case to Walmart. I needed to exchange something that broke and wanted him to pick out a couple of presents for his two main home nurses (in case you didn't know, it's nurse's week:). When we got to customer service, they gave me a hard time. They told me their computer said they had no record of the flawed product, and it hasn't been bought in at least 6 months (not true, I bought it 2 1/2 months ago). They said I was out of luck because I didn't have a receipt. I was so annoyed and frustrated. I was out $20, and they didn't care. As I headed to the back of the store, I remembered a time during my pregnancy with Case when things looked grim. A time when if Case lived, he would be plagued with serious physical and chromosomal issues (or so man thought). During this time I made a deal with God. I promised Him that if he made Case whole and gave him the grace to live a full life, I would stop letting little things brother me. I would stop sweating the small stuff and no longer "spaz" (inside and out).  God kept his part of the deal, and I was breaking mine. As we (just my boy and me) turned down every aisle I realized how unimportant that $20 and my pride were. In the big picture they mean nothing at all. During our walk down the aisles, a kind man showed a lot of interest in Case. He happens to be a paramedic and wanted to know all about Case, in case he ever ends up taking care of him. It was sweet.:) He told me a calm mommy is a paramedic's best friend (good to know!). As I was talking to the paramedic, another lady came up behind us and recognized Case from his blog! How cool! She even praised me on finding time to write it. And lady (sorry, I forget your name) if you're reading this, thanks for stopping me that day. I was blessed. Anyway, it seemed (as I walked though one of the biggest sources of my frustration...Walmart) that God was reminding me of the deal we made over a year ago. It's all about perspective.:) Oh, and by the way, one of the head managers ended up figuring out a problem the others missed and got me my stupid money back.



 I sent this silly picture to some of Case's favorite nurses. They LOVED it.


Case giving himself a gravity feed.

Monday, May 7, 2012

A very special Momma!


With mother's day soon approaching I thought I'd blog about all you special mommies!
Definition of MOTHER
1
a : a female parent

b (1) : a woman in authority; specifically : the superior of a religious community of women (2) : an old or elderly woman
2
: source, origin <necessity is the mother of invention>
3
: maternal tenderness or affection
4
: something that is an extreme or ultimate example of its kind especially in terms of scale <the mother of all construction projects>


but a mother is so much more. If I were Webster this would be my definition: 
Mother: 
1. A women who holds her pee, ignores her hunger and rarely brushes her hair in order to meet all of her children's needs twice over before her own. 
2. A women who has felt a love in a very deep and different way then ever before. 
3. A woman who would indeed die for her children but instead lives in a way she hopes will inspire them. 
4. A women who makes mistakes yells sometimes and has been more frustrated then she would like to admit but at the end of the day knows that she is the best mother she can be and for that she should take a deep breath, wipe the vomit off of her shirt and sweat off of her face and treat herself to a bottle (er, uh glass) of wine! 

No, really being a mother is hard work. It requires a strength you never knew you had, a love you didn't know existed and a selflessness that can only come when you hold your child(en) for the first time. Whether you are the mother of one or 6 children you deserve a pat on the back and a big "At a girl!" because you work hard. You are a blessing and you are richly blessed. 

While I was reading one of my favorite blog's "Samuel's Light" I came across this equally awesome blog:Rants from Mommyland. I really loved this particular post and have decided to to participate in their "Mother Pucker Project". This is what the Mother Pucker project is: "The point of the MotherPucker Project is, we want to reach out to moms in need and give them a little encouragement, help and love. It's about letting a mom who really needs it know that someone, somewhere GETS IT. That we see her for who she is and we want to thank her for what she's doing for her kids."

Simple and sweet. I encourage you (if feel like it, of corse:) to venture over to their pretty awesome blog and see the steps on how to make a momma feel special on her day.